Oddly, I'm startled every time I see him. And every time I see him I remember that he's there. Has been there for years. But somehow him being in this place in the world amazes me. He works at Sobey's in Angus, a town near where I live. He is the guy who collects the carts from the driveway or carries groceries out. His William's Syndrome is obvious through both his facial features and his ability to chat. CHAT. C ..... H ..... A ..... T.... ! I love being taken by surprise at his being, his presence. It's like he's suddenly ... there. Suddenly where he belonged all along.
Reading 'The Redbreast' by Jo Nesbo, a murder mystery set in Norway, I was caught by the story. It's no wonder that this book was voted by readers as the best ever Norwegian crime novel. It's smack dab spectacular. But then suddenly, on page 200, she appears. Out of no where, for no particular reason. Harry's sister shows up. She's got Down Syndrome. Then, equally suddenly a beautiful piece of writing follows describing her. To understand the quote you need to know that Harry's partner Ellen is a bird enthusiast and the book is full of bird trivia. Here's how Harry described his family:
"Dad needed to get out. The man who had once been so sociable had become a loner since Mum died eight years ago. And though Sis didn't get far under her own steam, you could often forget that she had Down's syndrome.
A bird dived with glee between the containers. The blue tit can reach a speed of twenty-eight kilometres and hour. Ellen had told him that. A mallard can reach sixty-two kilometres an hour. They both managed equally well. No, Sis wasn't a problem; he was more concerned about his father."
True later in the book more archaic words are used for disability, but still the character of Sis is tremendous. But what's cool, is she's just a character in a book. The book isn't about Down Syndrome, isn't about disability in any way. She's just in the book because she's in the book. It's like I was reading along and she was suddenly ... there. Suddenly where she belonged all along.
It was like that when going to see Notes On a Scandal the other day. Watching the film, getting into the story - akin to crawling into a sewer - on screen appears one of the main character's children. He, like Sis, had Down Syndrome. He's just a kid in a movie. His disability is discussed by Dench's character as a means of telegraphing what kind of person she is ... but nothing more. There are beautiful moments in the film, like watching father and son in front of the television just being together, laughing. No political commentary, just a picture of a family - at home. He's just there because families have kids with Down Syndrome. I was watching a movie and he was suddenly ... there. Suddenly where he belonged all along.
Ain't it nice to be pleasantly surprised? To reach into a box of chocolates and get the one with carmel in it? It is for me.
I'm wondering ... if you have ever just been taken by surprise by coming across someone with a disability in a book, or movie, or real life, that you just didn't expect there. Not like "The Memory Keeper's Daughter" where the story was about the disability ... but just out of the blue, for no reason other than to be there, to be present, to represent the diversity of the world.
If so, I'd like to hear about it.
Please.
I haven't seen Notes yet, but I've seen previews and heard the son has Down syndrome. I think you described it quite well - I was also pleasantly surprised to see he was just there as their son, and the movie wasn't based on Down syndrome, just a family with a son who has Down syndrome. I wish more movies would cast like this.
ReplyDeleteI remember watching Sesame Street, at least 25 years ago. There was a little boy with no arms going down a slide, my son asked, "what's wrong with him?". My son, who has mild CP was about 3. I said,"he has no arms." "Oh", he said.
ReplyDeleteLisa
I remember when my son was just a year old, seeing a TV program in England with some kids doing gymnastics - I wasn't paying any attention until I saw a few kids with Down syndrome in the mix. There was no comment about them, they were just there, no "aren't they wonderful?, aren't they "special?". They were just there like all the other kids doing gymnastics. It struck me then as exactly how I wanted the world to be for my son - no explanations or justifications required. He's here because he is, so we'll just get on with life, thank you.
ReplyDeleteIn Superman Returns, there is a scene where Lex Luthor is cheating a family out of its inheritance. There are several shots of the gathered family, the front person being a 50ish looking fellow sitting in a hospital wheelchair.
ReplyDeleteIn one of the episodes of The 4400, one of the incidental characters, a returnee is not merely a wheeler, but one with real 'chairing gloves and a nice looking rigid. She sat in it with the ease and comfort of one whose body it was an extension of, and it made me smile.
There are attempts at inclusion but they often still have an air of tokenism about them. It all seems a bit too right on. I've not seen anything recently where disability isn't used as platform or observation of otherness.
ReplyDeleteHow about the deaf guy in 4 Weddings and a Funeral ... great character. Do you know if the actor really was deaf?
ReplyDeleteThe Family Stone - one of the adult sons is deaf and it's not a plot point or anything, just part of the fabric of the family. It's my favourite Christmas movie for many reasons but mostly because the family is so real.
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